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Overview – Collecting Ethnicity Information in Hospitals Who and Why –Engagement and partnership with the communities whose data is being collected What –Standardization, multiple responses, ethnic mobility, contextual effects How –Education on how to answer, how to collect, how to use and understand –Auditing and undercounting

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Why Ethnicity Data Collection Might be Perceived as Problematic Historic and ongoing racial and ethnic discrimination in hospitals Historic and ongoing political marginalization from governments who are collecting the data Historic institutional abuses - Nuu-chah-nulth First Nation blood studies, Tuskegee syphilis, HeLa, residential schools Historic and ongoing data access issues (within a context of more general social exclusion)

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“Fundamental to the exercise of self- determination is the right of peoples to construct knowledge in accordance with self-determined definitions of what is real and what is valuable.” Marlene Brant Castellano Ethics of Aboriginal Research Journal of Aboriginal Health, 2004; 1:98-114 Data Governance

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Partnership with Indigenous communities This is the new standard for health research in Canada

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What’s Not Counted Still Might Count Major issue is that Indigenous identity is inconsistently and unreliably flagged in the large majority of health care utilization data systems in Canada Addressing this major deficiency in Indigenous health care utilization databases will require leadership and data sharing agreements with First Nations, Indian, Inuit and Métis communities and PTOs.

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Defining Ethnicity “Ethnicity is the ethnic group or groups that people identify with or feel they belong to. Ethnicity is a measure of cultural affiliation, as opposed to race, ancestry, nationality or citizenship. Ethnicity is self perceived and people can belong to more than one ethnic group.” (Statistics New Zealand)

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Defining Ethnicity An ethnic group is made up of people who have some or all of the following characteristics: a common proper name one or more elements of common culture which need not be specified, but may include religion, customs, or language unique community of interests, feelings and actions a shared sense of common origins or ancestry a common geographic origin.

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What and How What –Standardization, multiple responses, ethnic mobility, contextual effects How –Education on how to answer, how to collect, how to use and understand –Auditing and relative undercounting of Indigenous compared to non-Indigenous groups

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Review of the Measurement of Ethnicity Statistics New Zealand has recently completed a review of the measurement of ethnicity. The main findings of the review are: the continued need for collection of detailed ethnicity data that ethnicity be measured in a consistent way across all official statistics that the 2006 Census use the same ethnicity question as that used in the 2001 Census that Statistics New Zealand continue to educate respondents, users and producers of ethnicity data about the concept of ethnicity that a comprehensive programme of research into the measurement of ethnicity in official statistics be completed by the end of 2009 that all collections of official statistics measuring ethnicity should have the capacity to record multiple ethnicity responses that the method of reporting ethnicity in all collections of official statistics be self- identification that the response 'New Zealander', 'Kiwi' and like responses be separately coded the practice of prioritising ethnic group responses to one per individual will be discontinued'.

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Specifics of How….. When collecting ethnicity information, people need to be able to state their specific ethnic groups without being forced to identify themselves in a more general category. Detailed ethnic group information is to be collected in order to allow categorisation at the most detailed level of the ethnicity classification, level 4. Data can be aggregated into a smaller number of categories as users require.

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Overview – Collecting Ethnicity Information in Hospitals Who and Why –Engagement and partnership with the communities whose data is being collected What –Standardization, multiple responses, ethnic mobility, contextual effects How –Education on how to answer, how to collect, how to use and understand –Auditing and undercounting